Carer Support: Beyond Recognition to Action Elena Katrakis CEO Carers NSW Schizophrenia Fellowship of NSW 2014 Symposium

Carers NSW Is an association for relatives and friends supporting people with disability, mental illness, drug or alcohol dependency, chronic condition, terminal illness or who are frail aged. Carers NSW supports and advocates for all carers in NSW, and is the only state-wide organisation that has carers as its primary focus.

Number of carers In Australia, there are 2.7 million carers In NSW, there are 857,200 carers including 251,800 primary carers (Survey of Disability, Ageing and Carers 2012)

Recognition

Carer legislation in Australia Commonwealth Carer Recognition Act 2010 NSW Carers (Recognition) Act 2010 Other states and territories also have their own legislation

NSW Carers (Recognition) Act 2010 Introduced a standard definition of a carer to help family, friends and service providers to identify carers NSW Carers Advisory Council to promote carer interests Established the NSW Carers Charter Explains obligations of government departments, local councils and human service agencies

NSW Carers Charter recognition and respect support carers own needs and wellbeing carers views, knowledge and expertise carers rights, choices and opportunities Thirteen principles for carers relating to:

National Mental Health Commission Mental Health Commission of NSW NSW Mental Health Act 2007 Carer recognition in mental health ‘Regardless of how ‘family’ is defined… their contribution to the lives of people with a mental health condition cannot be underestimated.’ A Contributing Life: The 2012 National Report Card

Impact

Carer recognition in the words of carers… It has changed our lives enormously. It started the ball rolling for carers. Carer of a person with a mental illness on the NSW Mental Health Act 2007 There is a vast gap between rhetoric from government and others, and actual benefit to carers and the future of those for whom we care. Respondent to Carers NSW 2012 Carer Survey

45% felt that recognition of carers had improved over the past year One third of carers had heard of the Act 81% would like to know more about the Act 4% had seen evidence of the Act or the Charter being put into practice Carer Recognition: results from 2012 Carers NSW Carer Survey

Carers as partners in care? Lack of disclosure caused 78% of mental health carers some degree of anxiety, from a ‘small amount’ (20%) to an ‘extreme amount’ (14%). 38% felt they were rarely or never included as part of the care team (MHCA Survey of mental health carers, 2010 and 2012)

‘…The whole industry needs to reframe its support objective towards one that enables carers to feel whole rather than simply an appendage of the other's illness. Another 'client'!’ Respondent to Carers NSW 2012 Carer Survey

Partners in Recovery Mental Health Respite: Carer Support National Carer Counselling Programme Family Mental Health Support Services NSW Family and Carer Mental Health Program Funded carer support Young Carer Program

Opportunities & Challenges

Underpins carer support and complements carer legislation to: ‘support government and non- government organisations to go beyond the minimum expectations enshrined in legislation’ (FACS 2014) NSW Carers Strategy Focus areas Information & Awareness Employment & Education Evidence base Engagement Health & wellbeing Education

(NSW Government 2014 )

Strategic Plan for Mental Health in NSW Review of NSW Mental Health Act 2007 National Review of Mental Health Services and Programs National Disability Insurance Scheme (NDIS) Mental health reform

NDIS and carers Some NSW and Commonwealth carer support programs are ‘in scope’ for the NDIS Not all carers currently accessing support are caring for someone who will be eligible for NDIS funding NDIS funding is for supports relating directly to the needs of the participant, not the carer

NDIS: Positive developments Carer Associations participated in recent NDIS forum run by National Disability & Carer Alliance The NDIA is supporting the MHCA to build the capacity of the mental health sector to engage with the NDIS NDIA demonstrating willingness to learn and evolve Recent updates to Operational Guidelines, including introduction of Supports in the Plan – Supports for Sustaining Informal Supports

Action

Our role Offer services and support to carers, including: ―Carer Line ―National Carer Counselling Program ―Young Carers Program ―Mental Health Respite: Carer Support ―Education and Training Represent and advocate for all carers, including for continued funding for carer support Consult with carers on their concerns and experiences Develop resources to help prepare carers to engage with new initiatives, including the NDIS

Snapshot: Young Carer Program Young carers (YCs) are children and young people, 25 years or under, who are in a caring role. Aims: Promote the issues and needs of YCs Develop a YC support network Link YCs in with local services & support Build community awareness of YCs Resource distribution

Carers NSW Young Carer Leadership Program Young Carer Leadership Program (YCLP) launched in 2012 to give young carers a stronger voice in their community Young Carer Leaders supported by Carers NSW to take part in a variety of opportunities 2014 YCLP expanded to include an additional program for young carers aged The Carers NSW YCLP is the only initiative of its kind and one of five finalists for the 2014 HESTA Community Sector Awards: Social Impact Category

Young Carer Leadership Program YC Leaders at NRL Central YC Leaders at Triple J studios YC Leaders sharing their stories The workshops were so fun and interesting and they really made me feel understood and like I wasn’t alone. They brought me closer together. I learnt so much. Young Carer, 17, Dubbo.

Inaugural Young Carer Leadership Program for young carers aged Media Skills workshop with a journalist from Dolly magazine Team work at Taronga Zoo YC leaders with Carers NSW CEO This was such a wonderful experience for me. It has given me some new confidence and skills that will not only help in my role as a young carer but also in life. Young Carer, 14, Broken Hill

Young Carer Bursary Program 150 annual bursaries valued up to $10,000 will be awarded to young carers aged 25 years or under, on a needs basis, up to a cap of $1 million per year Designed to assist young carers continue their study, and reduce the pressure on them to further cut into their study time with part-time work There are an estimated 360,000 Australians aged 15 to 25 who are carers. There are also many carers under the age of 15 years

Raise awareness of the NSW Carers Charter and the NSW Carers (Recognition) Act 2010 Uphold the NSW Carers Charter in your work Your role

Assist carers to understand their rights under NSW Mental Health Act Continue to advocate for carer inclusion in health services, and funded carer support Engage with Carers NSW Carer Representatives Your role

Carers NSW 2014 Carer Survey is now open!

Carers NSW Head Office Ph: (02)